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Sarabjeet On Parenting Child With Fragile X Syndrome: “I Hate The Word ‘Accept'”

  • IWB Post
  •  April 7, 2021

Sarabjeet Kaur Arora calls herself a ‘special mother.’ Her son Bhavjal is 18-years-old and has Fragile X Syndrome or FXS. FXS is a genetic disorder that can affect a child’s behaviour, learning, appearance, and health. The Fragile X Society in India is doing tremendous work to spread awareness of this lesser-known syndrome, yet it is the real stories of families affected by it that are the heart, soul, and face of the condition.

Bhavjal is Sarabjeet ma’am’s firstborn. Pampered, extremely loved, and adored, she often refers to him as her ‘raja beta.’ When Bhavjal was born, Sarabjeet was ecstatic, but she was also quite young. All of but 22 herself, she didn’t understand much back then though Bhavjal had a few issues, like stomach aches, odd sleeping patterns, and constant bouts of crying. She first took him to a doctor because of a squint in his eyes when he was 10 months old. The doctor, however, candidly told her to take Bhavjal to a child specialist since he was not cooperating the way other children did during the check-up.

“Those 20 minutes of ride from one doctor to the other was one of the most difficult moments of my life. My husband and I sat in silence the entire way,” says Sarabjeet. The specialist examined Bhavjal and said that the child had ‘delayed milestones.’ But he couldn’t really pinpoint the exact syndrome. A few more years passed as Bhavjal continued to grow physically but reached his development and growth milestones later than normal children.

The ups and downs of learning

The first shock from society came when she went to enroll Bhavjal in a school at the age of 4. The local school refused to give him admission and told Sarabjeet to send him to a special school. “This was a hit back. Like all mothers, I was very excited to put my son in school, but it was then that I realized the thin line of difference and discrimination from society.”

And so Sarabjeet put Bhavjal in the special school Rajkumari Amrit Kaur Study Center. The aim, of course, was to try to make the children as independent as possible and set for them a routine to follow and keep busy. But the school was for children up until the age of 8 years and thus, the ordeal continued when she had to hunt for the next school. Just as ordinary schools, special schools also have an admission process and an interview. Of course, to have a process in place makes sense, but why again the level of scrutiny amongst special children themselves? “First, there is anyway discrimination between normal and special children,” says Sarabjeet. “I think each time, it is the parents who are the sufferers, we have to show the child’s reports all over again. I don’t mind giving an introduction, but there should be no discrimination. Usually, these schools, too, choose and give admission to those children who they think they can manage better, those that will not irritate them much or for those who the teacher might not have to work too hard.” Bhavjal did find a new school but things didn’t seem easy there either.

 

A ray of hope

Bhavjal was finding it hard to get toilet trained and was not adjusting too well in class. During the monthly PTM, the teacher flatly told Sarabjeet that Bhavjal ‘toh toilet betha hota hain,’ and there was not a single copy or activity to show his progress. Sarabjeet knew her son was capable of more, especially because at home he used to scribble, colour, etc. She took up the matter with the staff and Principal because as she says, “My child also has a right to education. Even though disabled, it is his right and it is my duty to give it to him.”

The school agreed to change his section and under the guidance of the new teacher Bhavjal finally came out of his shell and showed everyone what he was capable of doing. However, Bhavjal’s tryst from one school to another continued until he was finally enrolled into Aanchal where he continues till date. And it was during this time that Bhavjal was picked up by a sports coach, Mr. Surinder, who saw a spark in him. He made Bhavjal participate in many sporting events conducted amongst disabled children from 2016 onwards. And since then, Bhavjal has found his calling if not in academics, but in sports, winning gold, silver, bronze medals, and also a cash price in various sporting events, such as running and softball throw. Sarabjeet was clueless about this particular talent until in the very first sporting event Bhavjal bagged gold.

“I felt so proud. It was a big stadium, a lot of people had come and there, when I saw him with his medal in the first spot, I felt extremely happy and proud. They called the parents, too, and I cannot tell you how I felt!” In fact, Bhavjal too would wear his medal throughout the day at home and in every next sporting challenge would tell his mother how he would get another one.

The emotions and acceptance

Raising a special child is a challenge at various levels. But one thing that stands out about Sarabjeet is her iron will and unshaken love for Bhavjal. “He is my son and why should I not love him? I have never differentiated and I have raised him just as a normal child. We take him with us wherever we go, to restaurants, marriages, etc., because his observation and imitation are good. That is the way he will learn, by watching us. I don’t care what society or other people might think about it. I hear many parents saying that we have ‘accepted’ this child. I hate the word accept. Why would you accept something that is your own? This child is my own, mera apna beta hain, mera khoon hain.” She continues, “Until parents don’t give importance or respect to their own child, no one else will. Babaji has given me this special duty. I don’t want sympathy, but yes I do pray for health and resource.”

Yet, Sarabjeet’s in-laws lent no support to her whatsoever. As she says, “I raised Bhavjal in front of them with respect, love, and dignity. Not as a burden or even for the want of sympathy.” But Sarabjeet had to leave because her in-laws created such crass-level situations that pushed her out of the house. As she says, “They once broke the pipelines and all the water came onto the walls. We were simply unable to live and breathe. We were in a pathetic situation and no government or police or magistrate came forward to help me with my child, even when we complained.” She continues, “They put me in such situations where they probably thought I would come to them with folded hands but no. I fold my hands and bend my knees only in front of my God, not in front of anyone else, especially such greedy and heartless people.”

FXS and genetic challenges

“I have not left a doctor, hakim, vaid, pandit. I have gone wherever people told me to go to show Bhavjal and look for a cure. But there is no cure for FXS,” says Sarabjeet. “I think with Bhavjal it’s just a mind game. Just keeping him busy, setting a routine, and allowing him to release his energy worked for me. I send him down to play or let him cycle. Yes, there are times when Bhavjal becomes very stubborn and also starts biting himself in frustration but I try to divert his mind. He loves listening to music, keertan, he has a piano, his blackboard, etc. to help him be occupied.”

The FXS gene is passed down from the mother to the child. Does Sarabjeet feel a sense of guilt or does she find it harder to reconcile with society that is geared towards patriarchy? “My parental uncle and also my aunt’s son are affected but this was years back. There was no awareness then and I also came to know of it only after Bhavjal had been diagnosed. But I am blessed with a wonderful husband who has supported me throughout. He never raised a finger against me or questioned me. He never has once pointed it out to me or made me feel guilty. And he loves Bhavjal and would do anything for his sake of happiness. Yes, my parental family and my husband are my pillars of support.” She is also extremely thankful to the doctors who have helped her in her journey so far, including Dr. I. C. Verma, Dr. Jhamb, Dr. Veena Kalra.

Sarabjeet also has a younger son Prabhdit Singh who was born in 2007. To know if her second child was affected by FXS she went through the painful process of CBS whose reports came out 15 days later. The reports thankfully indicated that the second pregnancy was that of a normal child.

Of course, there were thoughts on how each of the brothers would react and gel with each other. But Sarabjeet is thankful that both Bhavjal and Prabhdit get along splendidly. Prabhdit takes care of his brother, even in little matters as keeping a watch on him while Bhavjal is in the balcony or making him eat his food, or taking him to the washroom. Sarabjeet says, “I have never treated them differently and Prabhdit is a real gem. I often tell him that Bhavjal is his elder brother physically, but he, Prabhdit, is the elder brother mentally.” At times Prabhdit’s friends have commented on how his brother shouts out loudly or he is not normal. But Prabhdit has not lost his love and respect for his brother, neither his friendships. Instead, he has been able to strike a balance, standing by his brother whilst maintaining his social friendships and circle.

Bhavjal with his father

Society, government, and perception

What are the changes that Sarabjeet as a mother of a special child would like for both the government and society to implement? To this Sarabjeet has a very profound answer. “We cannot change anyone’s nature. It is not necessary that people will behave with my child the way I want them to. In fact, how they behave is a reflection of their upbringing. There are some who wash their hands when Bhavjal touches them. And there are also those who come forward and talk to him and wish him.”

But she wishes that a few things change administratively. She faced issues while getting insurance because the company had problems covering Bhavjal. Similarly, the government schemes, such as Swavalamban Yojna where Sarabjeet had deposited an amount for Bhavjal seems to have vanished in thin air. Also, the government some years back came up with the idea of creating a single disability certificate for a lifetime. However, the certificate would be issued only from government hospitals after a series of tests, documentation, etc. Sarabjeet recalls how she saw parents, mothers along with their disabled children standing in lines since morning for the certificate. It took time and a lethargic attitude from the workers who saw no plight in a mother carrying a 14-15-year-old child on her shoulders because the child couldn’t walk. She wished that people understood such basic difficulties and at least expedite the process for such cases. In fact, it took a good many months for her to get the certificate herself, in spite of being educated and from a middle-class background. It is hard to imagine how much more harsh it must be for others.

And hence Sarabjeet, who felt a swell of emotions on seeing such conditions, decided to share whatever information she has and try and help as many such parents as possible. She says, “Even if I see a special child on the road I go up to the parents and ask them if they have made the certificate or if they would like to know about a particular process. I tell them upfront about my child, too, so they don’t feel offended.” Sarabjeet shares whatever contacts of doctors, experts, government protocols, schools, etc. that she has with her various groups, whether it be the Fragile X Society of India or her various other circles. “Someone guided me, too. And so if I have gone from one place to another or found out something that might help, I share it so that it becomes easier for another parent.”

Also, she hopes that the government or agencies come forward and help mothers of special children and provide them with a secure environment when their homes become unsafe.

Special in more than one way

As a parent of a special child, what is Sarabjeet’s biggest worry? “Frankly, my biggest worry is what will happen to him after me,” says Sarabjeet. But she feels confident because Prabhjit adores his brother and she knows that he will take care of him. However, her immediate worry is what Bhavjal should do now that he is 18. Special schools keep children till they turn 18 and then teach them vocational courses, such as candle making, wood work, etc. But Sarabjeet knows that Bhavjal is not interested in any of these. Also, he loves going to school. He packs his bag, keeps his bottle, books, etc. with him even when he sleeps at night so that he can be off to school in the morning. She hopes that the government here too, could come out with some provision to allow children to continue going to school so that at least their routine is not disturbed.

Sarabjeet

Finally, we sum it up by asking how Bhavjal has brought about changes in Sarabjeet. And to this, she opens up heartily, “I have become the strongest because of Bhavjal. He makes me so proud when he wins medals or when I see the medals in the showcase. I am just a housewife, but because of Bhavjal I have met so many experts, doctors, and people that have widened my experience and interactions. And in every way I have also learnt from them to better the life of my son. I am blessed, I am a special mother, and Bhavjal is a true soul, a crystal soul, and he loves me so much. Yes, Bhavjal ko duniya ki samajh nahin hain, duniya daari ki samajh nahin hain, but when sometimes, I am upset for whatever reason, he comes to me, takes off my spectacles, and wipes off my tears. And that moment I feel such a strong connection and so much love for him. He is my lucky charm, because when he is around, I feel everything starts falling in place, and things become easier for me.”

Well, mothers like Sarabjeet ma’am are special indeed!

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